Today I got not one but two calls from the
FDA, so apparently my persistence is paying off. They are going to do whatever the pharmaceutical companies suggest, especially since there are no other alternative drugs except Interferon and Ribavirin.
My contact at Vertex, who I just spoke to, is going to look once more into the IND application (Compassionate Use), and see if there's been any changes in their (Vertex) policy for allowing it.